A Caregiver's Struggle

 This picture was taken earlier this week when I took our daughter to an outdoor mall for her birthday. She was beaming - so excited to be spending time outside the house with mom who was poised and ready to spoil her for her 12th birthday.

And while my smile is genuine, there's a lot hiding behind it.

Earlier that morning, my husband woke up in extreme pain from a stomach issue that has recurringly plagued him for the last several years.

An hour before Evie and I left for our outing, Jeff looked at me and said, "We're probably going to have to go to the hospital this evening." I nodded silently, closed my eyes, and walked out of the room.

This is going to sound horrible, but I was pissed. Every other year since 2017, Jeff has been in the hospital on our daughter's birthday. And it looked like the cycle was going to continue.

I mentally began to prepare myself for the hours ahead: spend time at the mall with Evie, come home, immediately pack for the hospital (there's A LOT to pack for a ventilator dependent quadriplegic), maybe shower if there's time, wonder if the hospital is even going to let me in, should I call an ambulance or try to get Jeff into his chair and drive him there myself? Once they realize he can't pay, they'll have to let me in, right?

With all these questions swirling around inside my head, I set off for the mall with Evie while Jeff's parents stayed with him.

I snapped the picture above right when we got to the mall. We were walking in and were both so excited to spend time together shopping (even though I loathe extended amounts of shopping, it was worth it since I love my daughter). But behind my smile in this picture is all the worry of the morning. All the anticipation of what's to come. All the disappointment that my daughter's birthday might end with mom and dad in the hospital.

I texted Jeff every hour while I was away. At one point I got a text from him asking where some medication was. After sending instructions on where his dad could find it, they still couldn't locate it. So I asked, "Do you need me to come home?" I was met with a "No" answer and that they eventually found the medication. Still, I was rattled. In the middle of Old Navy, trying to find my daughter some new jeans that fit her properly, my worry for my husband was running over.

After several hours out with our daughter, plus a stop at the grocery store to pick up a cake, we made it home where I immediately switched into caregiver mode. Jeff informed me that since he didn't feel worse than earlier that morning, he didn't think we would be heading to the hospital. 

We were both able to breathe a little easier.

The next day he felt better.

The following day he felt worse.

And now it's today. He still feels like crap. And it's Friday, so I have to round out the week with homeschool as well as care for a quadriplegic who's in constant pain.

Evie and I made it till 10am before I had a breakdown. Summer is looming, and Evie's got a major case of senior-itis even though she's only in 6th grade. Combine that with a quad dad whose pain I absolutely cannot fix, and you've got one caregiving mom who blows her top.

Being needed is a wonderful feeling. Being torn between the complex medical needs of a quadriplegic spouse and the educational needs of a reluctant pre-teen daughter is not.

And at 10 am this morning I was SO. FUCKING. OVER. IT.

Maybe it's the time of year - as a first-time homeschooling mom, I've never been so excited for summer. Maybe it's 8 years of caring for my paralyzed husband. Maybe it's the pandemic.

I'm pretty sure it's all of it.

Today was not a good day. I cried off and on, which I rarely do. I teared up while making dinner, which I never do. I've been in a funk all damn day.

Jeff and I are awaiting our second shot of the vaccine, and we've been talking about how excited we are to finally be fully vaccinated. And as pro-vacciners, we are. But sometimes I wonder ... why? It's not like we're going to suddenly start going out once we're vaccinated. My husband hasn't gotten out of bed in a week because of his pain. For every five days of pain he endures, he gets one good day - sometimes only several hours - in return. 

What kind of life is that?

If you are among the people who are counting down the days until your favorite restaurant re-opens so that you can be there when it does, what you should be counting is your lucky stars. That means your normal is about to return.

But when my normal returns, my husband is still going to be paralyzed. And probably still in pain. My daughter is still going to need all the attention of her mom who can't adequately give it to her. And I'm still going to be stuck playing monkey-in-the-middle to both of them while marginally succeeding at maintaining my own sanity.

At this point, I have no desire to go out to a restaurant. I just want to sit out in our backyard and enjoy the evening breeze with both my husband and my daughter. I don't think this is too much to ask. So why is it so hard to achieve?

This blog post isn't happy. It doesn't have the life lesson or the positive wrap up I usually put on it. But it is 100% honest. And sometimes honesty is all I've got. 

I'm not looking for sympathy or encouragement or anything like that. I think I just needed to use my blog space to get some stuff out. To acknowledge a series of bad days. To be real and authentic about what it's like to be a spousal caregiver who is also a mother, a teacher, a problem solver, an individual.

I know things will get better. I'm sure we'll find something to laugh about tomorrow. 

And that will go a long way.